introduction from new member susan

[Guest guest]

hello everyone,

I joined several days ago but have not felt well so im slow saying hi.

im age 68 and have multiple sclerosis. so i get under the weather alot.

my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

i would be glad to have any members here address this if they can and also since

my mom died of regular alzheimers in her late 80s how much likely will it be i

get this too?

any information is welcome. im sure i will ask more questions as i go along.

i wondered if lewy bodies is genetic? i do not know any persons in my family who

had this. sincerely susan

[Guest guest]

Check to see whether they gave her Haldol in the hospital as she could be

experiencing a reaction to that medication. Also there are lots of other meds

that shouldn't be used in LBD. If you go to the files, you will find a list.

Welcome. Nan

>

> hello everyone,

>

>

> I joined several days ago but have not felt well so im slow saying hi.

>

>

> im age 68 and have multiple sclerosis. so i get under the weather alot.

>

>

>

> my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

>

>

> she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

>

>

> i would be glad to have any members here address this if they can and also

since my mom died of regular alzheimers in her late 80s how much likely will it

be i get this too?

>

>

> any information is welcome. im sure i will ask more questions as i go along.

>

>

> i wondered if lewy bodies is genetic? i do not know any persons in my family

who had this. sincerely susan

>

[Guest guest]

Welcome, .

When you say that your sister got so much worse when in the hospital makes me

think that perhaps she was given drugs that are bad for those with LBD.

has a list of the no no drugs that she posts from time to tiem. My mom

did a drastic change when in the hospital because of the Risperadol and Ativan.

>

> hello everyone,

>

>

> I joined several days ago but have not felt well so im slow saying hi.

>

>

> im age 68 and have multiple sclerosis. so i get under the weather alot.

>

>

>

> my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

>

>

> she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

>

>

> i would be glad to have any members here address this if they can and also

since my mom died of regular alzheimers in her late 80s how much likely will it

be i get this too?

>

>

> any information is welcome. im sure i will ask more questions as i go along.

>

>

> i wondered if lewy bodies is genetic? i do not know any persons in my family

who had this. sincerely susan

>

[Guest guest]

hi sherry, thanks for sharing this about your mom though im so sorry she suffers

from dementia. its very frightening to see your loved ones detertiorate so

rapidly . my sister has taken valium for 40 years before this happened. and i

onder if it could have increased her risk for this lewy body dementia? they gave

her haldol when she was admitted to the psychiatric unit and said she was

psychotic. then after a week of this drug and others like stellizine and the

like they transeferred her to a memory unit in a nursing home. i do not have

power of attorney medically   by myself. the man she gave it too was her

husbands nephew . he shares it with us and all but lives out of state and is not

very knowledgable of  her as i am. shes basically in a wheelcair, cannot walk

alone and yet less than a month ago was driving walking ok and yes, DID suffer

memory troubles and  recent seeing people in her home at night but this is such

a sudden dramatic switch i

just feel something is not right here . the staff say it can happen this quick

yet still i wonder. shes on seraquil now and something like a mood stabilizer? 

i can only offer support and try to learn as much as i can but its so upsetting.

sincerely susan

> hello everyone,

>

>

> I joined several days ago but have not felt well so im slow saying hi.

>

>

> im age 68 and have multiple sclerosis. so i get under the weather alot.

>

>

>

> my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

>

>

> she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

>

>

> i would be glad to have any members here address this if they can and also

since my mom died of regular alzheimers in her late 80s how much likely will it

be i get this too?

>

>

> any information is welcome. im sure i will ask more questions as i go along.

>

>

> i wondered if lewy bodies is genetic? i do not know any persons in my family

who had this. sincerely susan

[Guest guest]

hi nan, yes they gave her haldol. boy, i wish id known this when she went in .

thanks. i will check the meds list . im glad i joined here. susan

Subject: Re: introduction from new member susan

To: LBDcaregivers

Date: Monday, March 14, 2011, 4:19 PM

 

Check to see whether they gave her Haldol in the hospital as she could be

experiencing a reaction to that medication. Also there are lots of other meds

that shouldn't be used in LBD. If you go to the files, you will find a list.

Welcome. Nan

>

> hello everyone,

>

>

> I joined several days ago but have not felt well so im slow saying hi.

>

>

> im age 68 and have multiple sclerosis. so i get under the weather alot.

>

>

>

> my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

>

>

> she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

>

>

> i would be glad to have any members here address this if they can and also

since my mom died of regular alzheimers in her late 80s how much likely will it

be i get this too?

>

>

> any information is welcome. im sure i will ask more questions as i go along.

>

>

> i wondered if lewy bodies is genetic? i do not know any persons in my family

who had this. sincerely susan

>

[Guest guest]

She's had Haldol for a WEEK??? AND Stelazine?? Holy smokes, it is a

wonder she can function at all ... Personally Seroquel has worked

wonders with my mother, at very very low doses, but others have had

problems with that too. I'd be very wary of a " mood stabilizer " also.

People with LBD simply can't take the same meds as the rest of us (as

you are seeing - even something like benedryl can be extremely

harmful!), and when given " safe " meds, the dose must be started very

very low, and only raised in tiny increments as needed.

We all need to learn about these things, especially meds, when we are

caring for a loved one with LBD, because most doctors, even in memory

units or psych hospitals just don't know. From what you've said, I feel

it in my bones that it is probably the drugs that caused the rapid

decline; whether she can recover from that (as my mom did, mostly) is

anybody's guess but it is a shame that the medical profession has caused

this in their ignorance . The LBDA and others are working hard to

educate, but it is a long process...

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> hi sherry, thanks for sharing this about your mom though im so sorry she

suffers from dementia. its very frightening to see your loved ones detertiorate

so rapidly . my sister has taken valium for 40 years before this happened. and i

onder if it could have increased her risk for this lewy body dementia? they gave

her haldol when she was admitted to the psychiatric unit and said she was

psychotic. then after a week of this drug and others like stellizine and the

like they transeferred her to a memory unit in a nursing home. i do not have

power of attorney medically by myself. the man she gave it too was her

husbands nephew . he shares it with us and all but lives out of state and is not

very knowledgable of her as i am. shes basically in a wheelcair, cannot walk

alone and yet less than a month ago was driving walking ok and yes, DID suffer

memory troubles and recent seeing people in her home at night but this is such

a sudden dramatic switch i

> just feel something is not right here . the staff say it can happen this

quick yet still i wonder. shes on seraquil now and something like a mood

stabilizer? i can only offer support and try to learn as much as i can but its

so upsetting. sincerely susan

[Guest guest]

hi joan, thanks for sharing this and everyone here is helping so much. im going

to check the med list carefully and i ill put a bug in the nephews ear too about

watching out for meds. as i said, my sister had been taking valium pretty much

constantly since she was in her twenties and shes 74 now so i do wonder if that

is a big factor in causing any future demtia IF she had the lewy body genes?

also, yes, she was in a state of high anxiety when admitted to the psyc ward and

at this time they began the other stuff like haldol ect . she was walking alone

and no incontinence at that time, just apparently hallucinating and anxious but

a week later she was in the wheelchair and not walking alone, no bladder control

and very weak. she has conplained for several years of trouble swallowing though

no physical cause was found. she hardly eats as she fears choking. i have seen

her eat stuff while telling me she cannot eat so i wonder if its a delusion.

even the 

medical folks say shes a puzzle.  susan

Subject: Re: introduction from new member susan

To: LBDcaregivers

Date: Tuesday, March 15, 2011, 2:52 AM

 

Welcome, .

When you say that your sister got so much worse when in the hospital makes me

think that perhaps she was given drugs that are bad for those with LBD.

has a list of the no no drugs that she posts from time to tiem. My mom

did a drastic change when in the hospital because of the Risperadol and Ativan.

>

> hello everyone,

>

>

> I joined several days ago but have not felt well so im slow saying hi.

>

>

> im age 68 and have multiple sclerosis. so i get under the weather alot.

>

>

>

> my sister who is seven years older was recently diagnosed with dementia , lewy

bodies type .

>

>

> she became psychotic several weeks ago after telling me she had been seeing

people in her home at night though fully awake. she seemed undisturbed about

this until about a month ago when she became suddenly fearful and totally out of

it. the police and 911 were called by her and they took her to the hospital. at

that time she had been having memory problems but was ok walking by herself,

driving and no incontinence but only days after her admission she was wheelchair

bound , unable to hardly walk and experiencing incontinence. i can see the

mental stuff coming on this suddenly but physical symptoms coming on this

dramatically over just a few days seems very hard to believe yet the nursing

memory care unit shes now in say its typical of lewy bodies.

>

>

> i would be glad to have any members here address this if they can and also

since my mom died of regular alzheimers in her late 80s how much likely will it

be i get this too?

>

>

> any information is welcome. im sure i will ask more questions as i go along.

>

>

> i wondered if lewy bodies is genetic? i do not know any persons in my family

who had this. sincerely susan

>

[Guest guest]

yes sherry. she had both. im so discusted that they gave it before even properly

diagnosing her. i will do what i can to intervene but its touchy as the nephew

is not exactly open top ideas other than his own. i do not know how to approach

this without causing hostility and then maybe us not being allowed to have any

say as he has the durable power of attorney and though im her sister he is a

person who is very domineering and i am worried he mgiht get  nasty. susan

> hi sherry, thanks for sharing this about your mom though im so sorry she

suffers from dementia. its very frightening to see your loved ones detertiorate

so rapidly . my sister has taken valium for 40 years before this happened. and i

onder if it could have increased her risk for this lewy body dementia? they gave

her haldol when she was admitted to the psychiatric unit and said she was

psychotic. then after a week of this drug and others like stellizine and the

like they transeferred her to a memory unit in a nursing home. i do not have

power of attorney medically by myself. the man she gave it too was her

husbands nephew . he shares it with us and all but lives out of state and is not

very knowledgable of her as i am. shes basically in a wheelcair, cannot walk

alone and yet less than a month ago was driving walking ok and yes, DID suffer

memory troubles and recent seeing people in her home at night but this is such

a sudden dramatic switch i

> just feel something is not right here . the staff say it can happen this

quick yet still i wonder. shes on seraquil now and something like a mood

stabilizer? i can only offer support and try to learn as much as i can but its

so upsetting. sincerely susan